Saturday, August 22, 2009

Stopping Valcyte

I have to say I'm very grateful that I went to the local doctor who decided to run CBC and CMP both of which are supposed to be done monthly while on Valcyte. My ME/CFS doctor told me I didn't need anymore bloodwork for the next 3 months on Valcyte. I have been uncomfortable with this and have no idea what he was thinking when he told me that. It is irresponsible and unheard of.

I haven't had any labs drawn for the past TWO MONTHS I've been on Valcyte because my doctor didn't think I needed it.It is a dumb thing to do and I don't recommend it. Here's why: My local doctor who is familiar with Valcyte ran the above tests. I got the results this morning. My liver values (AST and ALT) are very high! What is scary for me is because I haven't had labs for the past two months (since June 2) I don't know how long those values have been elevated so I don't know how much damage has been done to my liver.

The other thing is my blood sugar was also elevated and the test stated I have prediabetes. I know of others on Valcyte who have had that happen.

If I hadn't had these tests I would have continued to take Valcyte for the next well two months now all the while causing damage to my liver which could have led to some really bad consequences.

I'm grateful it will be my local doctor handling this. If it was my ME/CFS doctor I don't know that I would have heard anything from him. I would hope so but his doctor skills lately have been...well, sloppy is the word that comes to mind. I fully expect that my local doctor will have me in his office early next week to run more tests to determine the extent of any damage. I'm also confident he will closely monitor my liver values to make sure they go down.

I just can't believe it. I've been feeling extra fatigued along with feeling like my liver is swollen. The swollen liver feeling has been there for at least a month. I've also had pain there but thought it might be gallbladder stuff. I wonder if this is also why I've been having water retention and a general lack of appetite.

This morning I woke up after another night of not sleeping (couldn't go to sleep until after 12, then was up from 3 to 6, then awake again at 9). I had this feeling not to take Valcyte this morning so I didn't. When I checked my email my lab results were there.

This just confirms my decision and gut feeling to change my ME/CFS doctor. I will probably go to another doctor at the same clinic. The other doctor has a solid reputation.

I do think there was Higher Power at work to have led me to the local doctor who ran the tests I needed.

I have no idea what to do in the meantime. Do I take the rest of my medications? I guess I'll look up each one to see if they are processed in the liver.

So my treatment with Valcyte is officially over. I just pray I don't have permanent damage to my liver.

16 comments:

Wow...so sorry to hear about this, Terri. Kind of scary, huh? I had a similar experience on Valcyte, where my white blood cell counts dropped so low that my doctor immediately took me off it. It's a rough drug.

Did I tell you about milk thistle? It helps the liver process all the meds and improves liver function (also a very inexpensive supplement) - maybe it could help you heal. My son and I both take it, just because of all the meds we take.

And since you did respond to Valcyte somewhat, maybe once your liver heals, you can try another anti-viral. I've taken Lavtrex or Famvir for almost 2 years now, with absolutely no side effects - they're both much gentler.

Sounds like you're making the right decision about the doctor - ongoing lab tests should be mandatory for anyone on Valcyte. Good thing you have this local doctor, too!

I am so sorry to hear you now have abnormal liver levels. Your other CFS doctor really has been putting your health at risk. Yes, Terri, is does nound like a higher power intervened for you. You are in my prayers for complete healing of your liver and prediabetes state.

Yes-it has been a little alarming! I plan on sending my other doctor a copy of those results. I'm going to ask him to prescribe Valtrex and then move on to another doctor.

It's good to hear that you've been on it for a year with no side effects! I sure hope it helps clear up some of my cognitive issues. My EBV levels are really high.I hope my liver heals quickly also. I found out that Dandelion tea can be helpful along with Milk Thistle (as Sue stated).

hi, i just found your blog googling high ast/alt levels and me/cfs... im not on any treatments for me/cfs cause im breastfeeding yet my ast/alt levels are also double and triple normal..is it possible this is an aspect of the disease and not the drug alone? also im not online alot but i am on facebook too my email is magdalene74@hotmail.com if you like...typingis screwy now broken spacekey makes life more difficult than it is lol

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About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help